Thriving with Type 1 Diabetes

My Superhero had me chasing down flying bunnies when she was nearly two years old. She loves playing with her favorite doll Jenny and she loves to pelt me with water balloons. My superhero is 4 years old and was diagnosed with Type 1 Diabetes on April 29, 2013.

Her life now is punctuated with insulin shots and finger pokes. What she eats has to be carefully calculated and scheduled. Athletic pursuits now come accompanied with extra carbs to prevent lows, but none of it changes who she is and what she is capable of doing.

Piper is still the girl who roles her eyes at me when I frustrate her. She is still the girl who loves to study ants on the sidewalk and she is still the girl with the amazing imagination and mischievous dancing eyes.

Photo copyright mypotlpeople

Photo Credit: Diabetes by Jill A. Brown, on Flickr, reproduced under a CC by 2.0 license.

Piper is the only child in her school to have Diabetes, and from the sounds of it she may be the only child to have ever had it at the school where she attends. After her diagnosis she started telling her friends that she has diabetes - but what four or five year old knows what she is talking about unless they have diabetes themselves? They look at her blankly like she told them about some toy she has at home.

Adults are more sympathetic but a lot of them are misinformed about type 1 diabetes. Type II is more prevalent and their experience tends to shape the common understanding of the disease. While Type II diabetes can be managed with changes in diet, Type 1 cannot.

Patients with Type 1 Diabetes do not make their own insulin so they need to take shots of insulin throughout the day to deal with their blood glucose levels. Depending on the persons age, how their insulin is delivered, the number of shots can vary; however, for the rest of a Type 1 diabetics life will require shots of insulin. Not taking insulin is not an option. It can be fatal.

Sometimes listening to misinformed people's advice can be frustrating especially for the parents of a type 1 diabetic. From people we have heard -just feed her healthy and she won't need the shots or she will grow out it.

Most people are curious and ask question or share their experiences with Diabetes.

This is Rufus. I somehow flipped him over in my photo editing software so the text on the shirt cannot be read. It says "Beating Diabetes with Hugs and Love X0X0". There are patches on his body and hands to represent the places where insulin can be given and where the finger pokes take place.

At the endocrinologist's office they gave my niece a bear called Rufus. He has patches all over his body showing the sites where insulin can be injected. There are even patches on his paws where he receives his finger pokes. Piper has given Rufus shots and finger pokes. It's nice for her to have a furry friend that has diabetes too and that can silently relate to her.

"Rufus Comes Home." tells the story about the origin of Rufus.

Before Piper wakes up in the morning her mother will test her blood glucose, draw back her insulin dosage and give her morning dose. She usually tries to do this before she wakes Piper.

Piper wakes up and immediately heads to the breakfast table. Usually after some whimpering that she still wants to sleep.

In front of her sits her 45 carbs she needs to eat for breakfast. Her breakfast is planned and measured down to the last carb. She needs to eat it - all of it - especially after receiving a rapid dose of insulin. If she won't eat something than you have to calculate what she ate and try to find something she will eat that fits the remaining number of carbs she needs. It can be very frustrating for her to have to eat everything.

Next she dresses, finds something to play with until its time to grab her backpack. Slips on her medical bracelet if she remembers it, waits for auntie (me) to grab her medical kit and stuff it in the bag than it is off to nursery class.

Piper walks to school stopping for every ant in her path. She is facinated by them right now. Heads into the school and looks for one of her friends to play with. Once of her friends offered her a timbit before school but it's not in the carb plan so she cannot have it.

She will have gym first thing so before she goes she has to have a 15 gram juice box.

Snack time is at 10:30 she will eat her snack with the other kids. It needs to be 15 grams. Sometimes the teachers bring in snacks and unless I know about it before hand, and it has a carb count, she cannot have what the other kids are having. It could spike her blood sugar.

11:25 am Piper gets picked up from school. She plays with her friends in front of the school for ten minutes. Sometimes she doesn't want to go, so she gets upset and won't listen. In that case she burns more sugar and you have to worry about a low right before lunch.

11:45 am Piper gets home washes her hands and plays. I make her lunch. It must have 45 grams in it. Usually what I make appears on her schedule.

12:15 we do a glucose check. If is okay. She eats lunch. If it's low. She has a juice box before lunch to raise her levels.

Around 1pm she is done lunch and is ready to play. Usually with me. She plays dolls with me. Her mom gets home around 1:20, has her lunch and goes over Piper's Schedule.

2pm She hangs out with her Mom. Sometimes they'll watch tv. Yesterday Piper and Mom did makeovers,

3pm Snack time. 15 more calories. Probably some fruit. She loves fruit.

3:15pm I give Piper her bath. I usually end up wet. She is dressed and her hair get dried.

4pm She either goes with Mom to pick Dad up from work or stays with me and plays perhaps another round of dolls.

5pm She gets her blood sugar checked. Another prick of the finger. Another shot of insullin. Next she eats her supper. 45 grams of carbs.

6pm More playtime, shopping with her parents, tv time or game time.

7:15pm snack time. 15 gram snack.

7:30 bedtime; though she usually doesn't fall asleep them probably not until 9pm.

10pm Mom checks her glucose. Another prick. If it's too low before bed. Piper is awaken to drink another 15 gram juice box.

3am - Mom checks her blood glucose again to make sure she has dropped to low at night.

Sometimes there are a lot more finger pricks. It depends if she shows signs of hypoglycemia or hyperglycemia. Sometimes she pricks her finger up to ten times a day.

This is what my 4 year old niece has to do several times a day for the rest of her life. It's a little over whelming to think about how many times the average type 1 diabetic will have to prick their finger. When I started doing her tests. She would refuse to let me. She would cry kick and scream. She only wanted mommy to do it, but Mom was at work and Auntie needed to do her tests. So I bought a bag or small toys and every time she let me to do her finger she got to pick something out. I did that for about two weeks and now she is fine with letting me do it and without a toy. We do it quick and get on with our day.

Photo: Piper with Princess Tiana at Disneyland two weeks after diagnosis.

Traveling with Piper with her new medical condition seemed frightening but her doctors encouraged us to go on the planned family vacation. Getting through security with syringes and lancets seemed impossible (especially because these things needed to go on the plane with her) but it turned out not be a hassle. Airport security told us they've seen everything and it was no big deal to them.

At the park we were prepared for the challenges we would face heat, more activity, more testing and possible correction doses. Everything she could possibly need was taken with us and we had no problem carrying everything on the ride with us including Splash Mountain (her new favorite ride). Because everything was new to us and we were not sure how she would respond we used the Guest Assistance Pass Disney provides. It helped keep wait times down so we could test her frequently and would not have to leave the lines. Sometimes lines moved rapidly enough we did not have to use the pass.